Tag Archives: anxiety

Seasons

Three months; twelve weeks; eighty-four days; two-thousand sixteen hours; one hundred twenty thousand nine hundred sixty minutes; seven million two hundred fifty-seven thousand six hundred seconds–how do you measure a quarter of a year? Even though I loved it, this post has nothing to do with the Broadway musical “Rent” (it was the first show I ever saw on Broadway, and these words resemble, albeit badly, words from one of my favorite songs from the musical, “Seasons of Love”). But diabetes has nothing to do with “Rent”. “Rent” is the story of a group of young people trying to survive under the shadow of a horrible, incurable disease…….hmmmm.

Medium was diagnosed with type I diabetes three months ago, in the winter. Now it is spring. A season seems an appropriate amount of time time. Appropriate amount of time for what? I feel like people think I should be “over it” already. That enough time has passed that things should just be back to normal now. That a season should be enough time to figure out how to live our new lives and just accept that “life goes on”. And it does. Life does go on. The cool, rainy afternoons of spring will, no doubt, make room for the hot, lazy days of summer. And certain things have gotten easier. I know how to count carbs, I know how to handle lows, and I can change out the reservoir set on Medium’s pump in less than 5 minutes. Diabetes doesn’t consume my every waking moment (and most of the sleeping ones too) anymore.

But you know what? No matter how many winters melt into spring or summers fade into fall, Medium doesn’t get better. If anything, he gets worse. Elevated blood sugars over time will wreak havoc on his body in the years to come. No matter how much time passes, we will still have to check his blood sugar 10 or more times a day, we will still have to count carbs and deliver insulin with every meal, we will still have to check his blood sugar overnight (or worry about him), we will still have to see the endocrinologist every 3 months, we will still have to bring snacks and rescue supplies with us wherever we go, we will still have to teach every caregiver, teacher, friend, school nurse, or coach he ever comes in contact with about his disease and what to do in case of an emergency. It never ends. The worry, the fear for his long-term health, it takes it’s toll on us.  All of us. We are exhausted; mentally, emotionally; physically. The stress it has put on this family is immeasurable, yet palpable.

But most people think that we are “fine”. We are still going to work every day, the kids go to school and keep up with their activities. We are going through the motions. Everything seems “fine”. We don’t really have a choice.

But we are not “fine”.

We will never be “fine” when the health and well-being of one of our kids is threatened. So until there is a cure, we are not “fine”.

So feel free to keep asking us how we are doing, or if there is anything you can help us with. Feel free to continue to pray for us and for a cure. Remember that as the seasons change, our efforts to keep our son healthy don’t. Feel free to let your heart ache for Medium and what he has to go through.  Because no kid should ever have his life threatened and his innocence ripped from him. And no family should have to helplessly stand by and watch it happen.

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Reason # 1,723 Why I Hate Diabetes

It is robbing me of my brain.

Our diabetes educator keeps talking about not letting diabetes run our life, but rather work our life around diabetes. Well, that is really hard to do…..especially for a control freak like me.  Caring for a child with a chronic illness is, in short, exhausting. Round the clock blood sugar checks, carb counting at every meal or snack, lots of math….I hate math.  Having to always be two steps ahead of diabetes is draining. Boy scouts would make good diabetics, you always have to be prepared.  Prepared for highs, prepared for lows, prepared for pump malfunctions, etc. And then there’s the constant worry. They have a continuous glucose monitor for diabetics, they should have a continuous worry monitor for us moms of diabetics that automatically dispenses Xanax, caffeine, wine….whatever your drug of choice is based on your reading.  Yeah, I’m going to invent that….in my spare time.

But that invention will have to wait.  I can barely remember to put shoes on before I leave the house these days. I forgot to account for Small after school one day and had to leave work abruptly and race home to meet the bus (overlooked the fact that no one was going to be home to get him off the bus). I have mailed bills and forgot to put stamps on them. I forgot about a meeting at work. Small has not had his library book on library day, ever this year. (Okay that one I can’t blame on diabetes, it’s been happening since the beginning of school.)

But today was the mother of all blunders. Today I did something that twelve years ago when I was a naive new mother, I would have been downright appalled at witnessing. (Although it should be noted that as a naive new mother, lots of things I witnessed of other parents appalled me. Like picking up a pacifier that had fallen on the ground and putting it back in the baby’s mouth without boiling it first, or letting a 2 and 4 year-old have soda, or leaving a restaurant table looking like nuclear war had descended upon it during your dinner with your children–all things that I eventually did, when I wasn’t so naive anymore!)

Today I forgot to be the Easter bunny. (Enter horrified gasps here.)

Yep, not my proudest moment as a mother hearing my 5 year-old say, upon realizing the Easter bunny stiffed him, “I hate the Easter Bunny!”

How the hell could I forget to be the Easter bunny?  And I didn’t just forget to put the stuff out, I didn’t even buy anything.  Nothing. Nada. Zip, zero, zilch.

Now, you should know, Large performed as Edmund in Narnia the Musical at the beautiful, brand-new Kauffman Center for the Perfoming Arts this weekend, (which, coincidentally, is one of my proudest moments as a mother) so I have been a little pre-occupied with that, but still. How the hell do you forget to be the Easter bunny?

I’ll tell you how.

Diabetes.

There is only so much room in this noggin of mine to worry and remember things and now that diabetes has moved it’s big butt in, there ain’t much room for anything else.

But in true Warrior Mom fashion, I (and CVS) saved Easter.  The Easter bunny was running late this year and came by while we were at church. And I will say, the Easter bunny did a good job of putting together diabetic friendly Easter baskets for the whole family. Sure there was some chocolate and some Peeps (I’m sure I will regret that one), but there was also sugar free gum, lots of nuts, beef jerky and cheese and cool bottled water and Crystal light.

So you can suck it, diabetes. I win this one!

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This Is Not A Joke

I’ve learned a couple of things about blogging in the last month.

#1  It’s kind of a lot of pressure once you know people may (or may not) be reading what you are writing.

#2  I cannot write when I am exhausted and stressed (which coincidentally is all the time now).  This past week has been especially bad as I have been working crazy hours all over the city supporting a go-live for work and I was on-call this week.  So I could barely form spoken sentences, let alone string together a series of meaningful, coherent words for a post.  Even as I write this my eyes are feeling heavy.  Small has been trying to come down with something for a few days and last night he succeeded.  He came into our room at 3 am barking like a seal and on fire.  This is exactly the same thing he had 2 months ago when Medium was diagnosed with T1D.  In fact, the only reason I took Medium to the doctor the day he was diagnosed was because I was already going with Small so I thought I would have this little “peeing” problem looked at.

Now Small is sick again.  And illness in this household is a whole new animal.  For starters, when Medium gets sick now we have to refer to a new chapter in our diabetes book called “Sick Day Management”.  I won’t go into details, because frankly, it confuses and scares me and I am floating down the river of denial thinking he will just never get sick and we won’t have to deal with it.  Think about it, if Medium gets insulin to cover food but then vomits the food, now he has too much insulin.  But if you stop giving him insulin altogether he will go into DKA (which if you remember is B.A.D. bad).  So what do you do?  Other illnesses jack with BG’s too, usually make you run high so you have to make adjustments in your insulin doses and constantly check ketones to make sure you are not going into the dreaded DKA.  It’s just a mess I don’t want to deal with. So, if I pretend it won’t happen then it won’t, right?

And as scary as it is for Medium to get sick, I think what scares me more right now is when either Large or Small gets sick.  It is believed that a person is genetically predisposed to developing T1D and that it happens as a result of the body’s immune system being called upon to fight an illness in the body and then it also decides that the islet cells (the cells that produce insulin) are intruders too so it attacks them.  When enough of those islet cells are killed, very little insulin is being produced and the next thing you know, you are very sick and someone in a white coat gives you the life-changing diagnosis of type 1 diabetes.  But when the body decides to do this, no one knows.  So now when Large or Small gets sick, I am freaking out wondering if this is the illness that is going to send their immune systems to battle with the wrong enemy.

Large and Small are more likely to develop T1D now that their brother has been diagnosed.  There is no way to know for sure if they will ever develop it.  I mentioned in an earlier post that they can test them for the auto-antibodies.  If they test positive for them, then it is likely they will develop T1D at some point in their lives.  If they test negative for them, it means that, for right now, they are not likely to develop T1D.  But they could develop the auto-antibodies at any time so a”no” isn’t really a “no”, it’s more of a “not right now”.  So I still have not decided if I am going to have them tested.  I know I could not handle finding out one of them tested positive right now, so for now, we are not testing.  Maybe someday, when Medium’s diabetes is like second nature to us, I will feel strong enough to hear the news, whichever way it goes.  But now is not that day.

So in a way, I worry less about Medium.  His cards are on the table.  We know what he has and we are dealing with it.  With the other two it is like a riddle that I have to solve.  Will they get it?  If so, when?  Can we prevent it?  Will we be ready for it?  Will we catch it early or will they get really sick?  How will they handle it? Are they worried that they might get it?  How could I possibly handle another child with this horrible disease?  This is not a joke, this is my life. Someone solve the riddle for me.

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Happy Anniversary!

Seems odd to think of an anniversary of being diagnosed with type 1 diabetes as “happy”, but we have real reason to celebrate today!  No, we didn’t discover the cure, and no, I didn’t figure out a way to turn back the clock to a time when Medium didn’t have diabetes.  But our lives have been altered, the path of our journey has changed course and we have a new normal, so different things make me happy now. Like Medium having an A1C of 6.8.  Oh yeah baby, sweet! The hemoglobin A1C test is the litmus test for diabetics to make sure they are staying in range.  A diabetic only knows what their blood sugar is when they test it and who knows what it is doing the rest of the time.  The life of a red blood cell is 90 days, so the test is able to look back and tell you what your average blood glucose was over the last 3 months.  A healthy, “normal” A1C is between 4-6.  When Medium was diagnosed and in the hospital his A1C was 11.4 which told us that his average blood sugar for the 3 months before diagnosis was in the low 300’s.  I bought a home A1C kit which had two tests in it and we took one at his one month mark and it had gone down to 8.6 and now at  the 2 month mark it is 6.8.  Now, I don’t know how accurate the home kits are, but most research I have done says they are accurate within 20%.  We will get an official A1C at the endocrinologists office when he goes for his 3 month follow up.  I will probably do a home test before we go to compare it to the doctor’s office test and check for accuracy.  But none the less, I am so excited that his A1C is so good.  It is almost in normal range and that is even with one month of pre-diagnosis, non-medicated blood cells on board!  So basically we are kicking diabetes’ ass, even without a pump!

And speaking of the pump…..that leads me to my next reason to celebrate today.  I found out yesterday that the insurance company paid the claim for the pump! They denied the claim for the continuous glucose monitor but after a few phone calls, I am fairly certain that will be paid, too.  (They only cover the CGM for one diagnosis code and they must have overlooked the code on his script because it was on there).  So we are spending this weekend going through the all the instruction manuals and taking the online lessons so I can call on Monday and we can schedule our pump training.  Woohoo!

We spent the evening with some of my oldest friends (they aren’t old, I have just known them for a LONG time).  One of the families lives out of town and the other family lives about 25 minutes away and we just don’t get together very often.  There are 8 kids between us and they are all between the ages of 5 and 12, all boys except one girl.  The kids all had a great time together and Medium was right in the mix, hoopin’ it up having a great time.  And I couldn’t help but get a little choked up watching him.  Because while we still have a long road ahead of us and a lifetime of managing this disease, I took comfort in seeing just how far we have come in 2 months and watching Medium having a normal, happy Saturday night with friends.

But I still hate diabetes.

Me and "My Savior".

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I Hate Diabetes

I hate diabetes.

It scares me and it makes my heart ache for Medium. It makes me mad and sad.

Medium is a rock star.

He rocks.

He doesn’t complain and he takes it all in stride.

I think sometimes that makes it harder, sadder for me.

Sometimes I want him to get mad.  Sometimes I think he just needs to get pissed at diabetes and pissed at the world who gave it to him.

I worry that he holds it all in.  But I know him, and really, I just think that is his personality.

Thank God.

Ironically, I have thanked God more since having a child diagnosed with a life-threatening disease than I ever did before.

Thankful that Medium is so easy-going.

Thankful that Medium likes to snack…..even at 3 a.m.

Thankful for the development of synthetic insulin.

Thankful for technology.

Thankful for caring doctors, nurses and researchers dedicated to helping people manage this horrid disease.

Thankful for a school nurse who is all over it.

Thankful for babysitters and caregivers who are willing to take on the extra challenge of caring for a kid with a serious health condition.

Thankful for friends and  family members who love me during my times of stress and support me no matter what.

I worry about Medium’s future.

I worry about when he goes off to college.

I worry about how all of this affects his brothers.

I worry about how all of this affects my marriage.

I love Medium.

I hate diabetes.

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What You See Is What You Get

Yesterday I posted something very personal, a little too personal according to some.  I do my best to be kind and responsible, thoughtful and respectful.  I am a passionate person so I have to keep myself in check and make sure I am making rational decisions and not emotional ones.  My decision to be transparent yesterday was actually very well thought out.  You see, I am very confident in who I am.  I am confident that I am not perfect and have lots of flaws.  And that is just the way it is.  I am too tired to try and pretend to be something I am not, to act one way with certain people and then another way with others.  With me, what you see is what you get, good or bad.  And I’m not going to lie to you, sometimes, it’s bad.  But I own it.  When I make mistakes, I apologize for them and do what I can to fix them.   I think if people understand where you are coming from and they don’t have to guess what your intentions are, then they respect you.  That doesn’t mean they like you or agree with you, but they respect you.  So I hope that whether you like me or not for publishing my post yesterday, whether you agree with it or not, hopefully you at least respect me. But if you don’t, that’s okay too!   🙂

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Just Another Manic Tuesday

Today is a good day.  It is gorgeous outside, 75 degrees and sunny.  I am home with my kids today and Medium’s blood sugars are in range and he is feeling good.  We met with an insulin pump company and have made our decision.  I just had a good meal and am sipping on a diet Coke.  I am feeling, in a word, manic.  Yes, I said it, manic.  As in manic-depressive.  Does that make you uncomfortable?  Now, let me set the record straight right now.  I have not been diagnosed with bipolar disorder.  And I am not pretending to be a doctor, a psychologist or an expert in any way, and none of this is intended to be medical advice.  These are simply my opinions and interpretations of myself and my moods.  While I do not think that I have the clinical diagnosis of bipolar disorder; depression, anxiety and mental illness run in my family.  And I think I am on the spectrum somewhere.  I don’t believe mental illnesses are just black or white, that either you have them or you don’t.  Instead, I think there are varying degrees of them and I think people have a varying ability to control them.  Just like one person might have slightly high cholesterol and can manage it with diet and exercise, another person might have very high cholesterol and might need medication to control it.  Or how a brittle diabetic has a very difficult time controlling their blood sugars despite their best efforts, while someone else’s body responds well to their insulin therapy.  Much like the sullen teenager dressed in all black, mental illness is misunderstood because of its face value.  We hear the word “mental” and we think the mind has some kind of control over the situation, and sometimes it can. Psychotherapy has proven very helpful to many people in managing their varying degrees of some mental illnesses.  But what most people don’t understand is that many “mental” illnesses actually have physiological roots.  They are chemical imbalances in the brain.  We have no more control over developing  those imbalances as Medium had over developing type 1 diabetes.  Society has made it shameful to admit that you suffer from some level of mental illness, because it is deemed as controllable and therefore you are weak or crazy if you don’t control it.  And talking openly about your mental illness makes others uncomfortable, so most people just don’t talk about it.  Well, I am not most people, and I talk too much so here it is.  I suffer from mental illness, or whatever some people want to call it.  I battle depression and anxiety in varying degrees sometimes. I am a germaphobe and am probably a little OCD, too (I like all the labels in my pantry to be facing out, I can’t sit with my back to a door, I wash my hands, A LOT, am addicted to hand sanitizer, stuff like that).  Some people would argue that these things do not qualify as true mental illnesses.  That only if I was not able to function on a daily basis because of these things could I claim to suffer from mental illness.  Whatever, call it what you want.  But like I said, I believe it is a spectrum and I feel like most people I know are on it somewhere, so I don’t know why we are so afraid to talk about it.  I do not take anti-depressants although I have tried them before.  I just don’t think I saw a real benefit from them, so for me, it is not the answer.  But I believe for some people, it is absolutely necessary and vital to their health and wellness.  I am not going to pretend that I know or fully understand the complexities of mental illness.  I just know that some days, (like today) my mood is great and I feel like I can take on the world, and some days I feel like I am tumbling down a deep, dark hole of despair.   And sometimes, I stay in that deep, dark hole for days or weeks.  I always find my way out of the hole with a combination of love, patience and understanding from my family, a visit to a therapist and an occasional Xanax.  These are my tools.  But just because I can control my depression, anxiety and mood swings with these tools and not anti-depressants, doesn’t mean that others should be expected to manage their disease the same way.

A diagnosis of any life-threatening chronic disease with no cure will no doubt bring on a firestorm of emotions, but diabetes especially so.  The days of a diabetic are filled with highs and lows, literally.  One minute you are in range, and the next you are not, and that can be hard to deal with. Diabetics (and their caregivers) should be monitored for developing depression.  When Medium’s BG’s are in range, I am much more likely to be in a good mood and when they are not, well, that’s when I have to use my tools to keep me out of the deep, dark hole.  The first two weeks of Medium’s diagnosis, I was in the hole. Big time.

I do a pretty good job of managing my mental illness.  As I do with most things, I use humor to deal with it.  I joke about my mental state, call myself crazy or neurotic, because if I do it first, then it takes the power away from the words and others can’t use them to tear me down.  It also makes people laugh and relax and it opens up dialog about a topic that needs a lot more awareness.  Some of my favorite conversations are the ones where I am trading stories of neurosis with someone else.  We both walk away feeling like we are not alone, and ironically, like we are NOT crazy!  And chances are that someone who suffers from some level of mental illness is a stone’s throw away from you right now.  So if you are ever given the opportunity to help raise awareness and peel away the shame of mental illness…..JUST DO IT!

I am not a doctor, or a nurse, or a psychotherapist and this is not intended to be medical advice.  This is my blog, and these are my observances and experiences with mental illness.  Your experience with mental illness may be very different from mine and you may disagree with my take on the situation.  Please seek the advice of a medical professional if you have questions or think you may be suffering from a mental illness.

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Ground Rules and Disclaimers

Ok, so I have posted 3 entries and have discovered a few things that are nagging at me to get out.  My writing has gotten me into trouble in the past and that makes me sad and unhappy because my intention is to entertain people while releasing some stress of my own.  And we have all heard the saying, “if mama ain’t happy, ain’t nobody happy” so I need to set some blogging ground rules (plus, I just like rules, ask my kids).

First of all, it gets really old typing “type1 diabetes” all the time, so I will abbreviate it to T1D.  Also, it has been brought to my attention that in the interest of privacy, it might be best to not put the full identity of my children on this blog.  So when I write about them I will refer to them as “Small”, “Medium” and “Large” because that’s what I call them at home since I can’t ever get their names straight.  Small is my 5 year-old, Medium is my 10 year-old and Large is my 12 year-old.

Second, I want to make sure I am not misunderstood.  I am a person who uses humor to express herself.  Sometimes people misunderstand my humor.  Let me set the record straight.  I do not think diabetes is funny, at all.  I do not take my responsibilities as a mother of a diabetic child lightly, and I don’t ever want anyone to take the flip comments I might make from time to time about diabetes, or the medical community as the law.  Sometimes I get irritated and writing is my outlet.  Let me vent.

Thirdly, I often talk about my kids in a way which some people might think I don’t even like them.  Rest assured, I love my children, but they irritate me sometimes (as does my husband, but that is another post all together)!  But I will let you in on a little secret….come closer….closer….closer, ok……I am human and I have flaws, GASP! Yeah, that’s right, I get irritated, a lot actually.  By my kids, my husband, my mother, my sisters and brother, my coworkers, the mailman, the lady in front of me in the check-out line at the grocery store who has 17 million coupons and a Zip-loc baggie full of coins, people who park so crappy in their parking spot that no one can park next to them, people who yell at their kids in public, (oh wait, I do that),  people who litter, people who try to talk to me in public restrooms (hello people, I am urinating here! This  is not Tammy’s Tea Time!  Stop talking to me while I am wiping!) oh the list goes on and on and on….but, in the words of  beloved golden girl, Sophia Petrillo, I digress.  Truth be told, I have to keep myself in check because I worry that I will come off as an annoying bragger of my brilliant, amazingly talented, gorgeous children, so I pick on them sometimes to offset the bragging.  (Smile)  But I promise you, I would step in front of a speeding bus for them, so don’t get too worked up about the way I blog about them.

Forthly, sometimes I write words or phrases that are not grammatically correct, again, this is for humor.  I promise you, I did graduate high school (college too)!

While this is mainly a blog about my life as a mother of a child with T1D (if you didn’t skip ahead to the end you know what that stands for), sometimes I will post things that have nothing to do with diabetes.  Because even though we have only been dealing with this for a short time, I can tell you I already know how important it will be to my sanity to take a break from diabetes from time to time (ha, that’s funny, because there is no break from diabetes, EVER.  That’s one of the things that sucks the most about it).  But I have 2 other kids and other interesting and funny things to talk about, so I will.

Sometimes I will talk about escaping the stresses of my life through drugs and alcohol (nothing major, just like beer and Xanax).  Again, this is for humor, I am not an alcoholic or a drug addict (not that there is anything wrong with that….)

Okay, I think I am getting sidetracked again.  I guess what I am trying to say here is, this is my blog and I can say whatever I want. No, wait. Let me try that again.  I am just a woman who is doing the best I can at managing my crazy, busy life.  It ain’t perfect, and it ain’t pretty, but it is the best I can do.  And if anything that I write in this blog, in an effort to vent my feelings, offends you, then stop reading my blog!

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